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Banking on a life with MS: financial planning is important for any adult. It's absolutely vital for those living with MS.

Kevin and his wife, Eileen*, had worked with a financial planner in the past, but the couple, who lives in New York, hadn't prepared for the financial drain that followed a rapid worsening of Kevin's multiple sclerosis. (*Their surname has been withheld to protect their privacy.)

"After Kev was diagnosed, everyone kept saying, 'You'd better get your finances in order,' " Eileen says. But years passed before she got the ball rolling. "I regret that I didn't do it sooner."

Financial planning is important for any adult. It's absolutely vital for those living with MS, due in large part to MS-related healthcare costs--in particular, medications and long-term care. In fact, 62 percent of personal bankruptcies in the United States result from being unable to pay medical bills, according to a 2009 study. Among those who filed for bankruptcy, most had health insurance, and those with MS had some of the highest out-of-pocket medical expenses--averaging $34,167 total upon filing. What's more, a person with MS leaves the work force just 10 years after diagnosis, on average, due to physical or cognitive limitations--sharply limiting earning potential even as expenses become progressively greater.

Kevin and Eileen have since met with a financial planner, an elder-law attorney and a social worker. They've protected family assets by moving them out of Kevin's name. (Consult with an elder-law attorney in your state, as laws vary widely.) And in April, Kevin, 60, was approved by Medicaid for a part-time home health aide--a victory that saves them money and allows Eileen a break from full-time caregiving.

Because MS winds a different course for everyone, each person or family needs an individualized approach to managing finances. However, certain launch points are universal, and the sooner you get started, the better prepared you will be for what's to come.

Seek professional advice

Meet with a financial adviser experienced in working with clients with MS or other chronic health conditions. She can help address the complexities of health, life, disability and long-term care insurance, employment benefits, taxes and estate law, or make referrals to credentialed professionals in each of these areas.

In most cases the price of good advice is worth the payoff. If someone absolutely cannot pay, the National MS Society can make referrals to resources such as Financial Education Partners, a program created by the nonprofit Society of Financial Service Professionals to provide free financial counseling to clients referred through the Society. (Call 1-800-344-4867.)

Before meeting with an adviser, ask yourself when you expect to retire, how much you and your family can live on and what significant expenses you may incur down the road. Prepare to have tough conversations about your MS, including your neurologist's best estimate of how your disease will progress. The upside of this stark reality check: the peace of mind that comes from knowing you have a financial cushion in place--or at least a plan for creating one--before a crisis hits.

Remember that planning is a process, not a one-time event. Stay in touch with your advisers--they can help you navigate the rules and details of various programs that might be useful in the future.

Saving is priority No. 1

Whether you have MS or not, advisers can't stress enough the importance of saving and paying down debt. Ideally, people should have emergency savings to cover three to six months of household expenses, such as rent or mortgage payments, utilities and food, should they face an unexpected financial blow. However, that goal is tough for many.

"Many people who have MS don't have one month's worth of expenses in the bank, much less six months'," says Dick Bell, director of Financial Education Partners and owner of Calabasas, Calif.-based Bell Financial.

His message to all clients: Live beneath your means. Shoot to save 10 percent to 15 percent of your income--or however much you can--in a dedicated account, for emergencies only. "This money is not for college. It's not for vacation," Bell says. "Nothing you can buy today is going to give you the long-range pleasure you will get from having a chunk of cash in the bank you can fall back on."

If you're married, consider purchasing a long-term care insurance policy for the spouse without MS, suggests Bell, in case that person incurs significant healthcare expenses of his or her own.

Bell also suggests trying to pay off a mortgage early, since people with MS may retire sooner than expected and live on a smaller income. If your current home won't suit your future needs, budget for the cost of moving or making modifications before you absolutely need them.

Let your employer work for you

Employment benefits can go a long way toward buffering finances. Dive into the details about all the benefits at your job (or your spouse's) so you can make the most of them. If you're interviewing for a job, take time to review your future employer's benefits plan.

Health and disability benefits are common (50 percent of Americans with MS get health insurance through their employer, according to a 2007 report) and group plans generally have fewer restrictions on pre-existing conditions than if you purchase such plans on your own. Enroll in group health and disability benefit plans as soon as your employer offers them, or risk a penalty for late enrollment. Find out how long you need to work (or how long you need to be disabled) before benefits kick in, and how much of your expenses you can expect the plans to pay.

Put as much as you can into a tax-favored retirement savings account, such as a 401(k) or an Individual Retirement Account (IRA). Contribute to it regularly. Many employers provide matching funds with a 401(k), and the money never enters your bank account, making this one of the easiest ways to save. Because people with MS may work fewer years, many choose investments that carry higher risk and reward.

Know the vesting requirements for your retirement or pension program. For instance, you may qualify for a given year's full benefit only after you've worked a minimum number of hours.

Access government programs

Government support is a major component of financial planning for many people with MS. It may help fill the gaps if someone can no longer work or lacks private insurance. Some programs have income and asset restrictions. Others hinge on proving a disability. Qualifying can take time, and requirements vary for each, so it's important to talk to advisers (or call an MS Navigator[R] at 1-800-344-4867) early on about the best options available to you.

If you've worked and now you're deemed medically disabled--a lengthy process that involves your doctor presenting your case to the Social Security Administration--you will likely want to apply for Social Security Disability Insurance (SSDI), in which you receive retirement benefits ahead of normal retirement age. As well, SSDI is a prerequisite for earlier-than-usual access to Medicare--which covers or partially covers about one-third of those with MS, according to a 2007 report.

However, Medicare will not start until 24 months after you qualify for SSDI. Bell notes you may be denied SSDI the first time you apply, but you can appeal and receive payments retroactively if you win. For information on how to best present your case, go to SSDIselfadvocacy. In the interim, many people turn to COBRA, in which you keep your former employer's health insurance, at a higher premium, for 18 months or more.

If you haven't worked enough to receive SSDI and you aren't insured through a spouse's plan or work history, qualifying for government programs becomes more complicated. For instance, to receive Supplemental Security Income (SSI), not only must you be deemed disabled, but your assets can't be greater than $2,000 (or $3,000 for a couple). The same goes for Medicaid--at least until 2014, when the Medicaid "asset test" would end, a result of the Affordable Care Act legislation.

Until then, many private individual plans will deny you based on a pre-existing condition, Bell says. However, he notes that some federal and state-based options may be available, though these usually carry high premiums and deductibles. Obtaining accurate and up-to-date information about health, disability and life insurance can be crucial. Call the National MS Society for information and counseling on health and other insurance benefits at 1-800-344-4867, or visit or

Estate planning

Estate planning isn't just for the rich, and it plays a critical role in protecting any assets you have while you're alive, as well as directing where they go after your death, says estate planning attorney Martin Shenkman of Paramus, N.J., who began specializing in helping clients with MS after his wife was diagnosed in 2006.

Like Kevin, many people with MS move assets out of their name by putting them into a trust, such as a Supplemental Needs Trust. "I'm not trying to beat the system," his wife, Eileen, says. "I have a little bit of savings, but once he needs care 24/7, I'll go through that money in a year." Be aware that Medicaid and other government benefits that have low-asset thresholds will consider any assets you've had for the last five years.

Shenkman advises hiring an attorney who has experience working with people with disabilities to draw up other legal documents, which may include a will, living will, power of attorney, health proxy and a privacy release in accordance with the Health Insurance Portability and Accountability Act (HIPAA).

The HIPAA release is particularly important for people with MS because it authorizes a specific person to access your medical records, Shenkman says. Ask yourself: Who do I want helping me make medical decisions if I no longer can? Who is going to manage my finances if I cannot?

An estate attorney can help formalize bequests and donations. Many organizations, including the Society, present detailed information about planned giving on their websites. For many people, it's important to know that after they're gone, some of their assets can go to organizations or causes that have been dear to them throughout their lives.

Laura "Beth" Spears, 47, relies on disability payments for income, so her budget is slim. But when her MS required her to buy a new home without steps, she made an aggressive financial move: She took out a 15-year mortgage instead of a standard 30-year loan. Over the term of the loan she'll pay less interest. "Things are very tight," she says, "but it will be worth it to know I own it."


Since MS-related fatigue prompted Jen Gerics, 41, to leave her full-time job as an ultrasound technician, she and her husband have found it difficult to save money. "We'll set some money aside, but then we use it to pay bills," she says. Now Gerics is working toward her master's degree in social work with the aim of finding a part-time job with fewer physical demands, better pay and a retirement savings plan. "Maybe, if I make enough money, I can get off disability."


In 1983, Maureen Reeder's mother stopped leaching due to her MS. Meanwhile, Reeder's four-generation family farm had gone into debt. "We couldn't lose this farm on our watch," Reeder says. Then 22, she and one of her brothers met with an attorney and a financial adviser to plan for their mom's care and to try to save the farm. They sold assets, rented the land, and their father took a job off the farm--with health insurance that covered their family. They still own the farm today.


Primary-progressive MS put an end to Kevin's career in police work and security. Kevin, 60, and his wife, Eileen, have spent the last two years swiftly amending their financial plans and completing the loads of paperwork that go along with them. "It's not just about moving banking and our house out of his name," Eileen says. "We had to scramble to get wills done. Medicaid wants life insurance information. Those are the things we didn't think about before his diagnosis."


Further investments

The Allsup True Help Disability Web Expo will offer free online expert advice and resources on disability matters, live on Sept. 27, and available until Dec. 26. Register at:

Martin Shenkman, an attorney with experience in planning for a life with MS, leads a series of webinars for financial professionals in his RV4TheCause series, live from his Airstream trailer while on the road with his wife, Patti. For more information, go to

To read more on the topic, check out Shenkman's book, Estate Planning for People with a Chronic Condition or Disability, or the National MS Society's Adapting: Financial Planning for a Life with Multiple Sclerosis guidebook.

For help finding specific financial or legal resources, call an MS Navigator[R] at 1-800-344-4867.

Kelly Pate Dwyer is a freelance writer in Denver. She writes about personal finance, health and nutrition.
COPYRIGHT 2012 National Multiple Sclerosis Society
No portion of this article can be reproduced without the express written permission from the copyright holder.
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Title Annotation:Money Matters
Author:Dwyer, Kelly Pate
Geographic Code:1USA
Date:Sep 7, 2012
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